I can’t stop the flood of thoughts. I can’t stop talking and writing. I write pages and pages about my life. I need to make sure that all that I am and have been doesn’t disappear should this disease take me. And the chances are very high it will. Despite my physical fitness, my passion for life, and my deep love for the people around me, I am going to die, and probably soon. I know it and my family knows it. Training for the Ironman is over. My life as I’ve known it is over.
But I am not going down without a fight, and, strangely, I’m feeling optimistic. Since my first husband’s death from melanoma, I’ve kept up to date on the latest research about this terrible disease. Every time I read about another medical advance, I think about Witold and wonder, What if he’d survived long enough to receive this treatment? Would he still be alive today? It is heartbreaking to think that the astonishing advances in this field came too late for him.
The newest and most promising front in the battle against cancer is immunotherapy. This cutting-edge treatment uses the body’s own defenses to fight the disease, empowering the immune system to recognize and destroy cancer cells that would otherwise evade it. Research organizations, scientific journals, and even newspapers and TV news programs are touting immunotherapy as the most exciting and encouraging advance in cancer treatment in decades, perhaps in all of medical history.
My melanoma oncologist, Dr. Hodi, who treated me in 2012 when they found the melanoma on my neck, is a renowned expert in cancer immunotherapy. Although we’re still waiting for the lab results, based on Dr. Dunn’s evaluation, Dr. Hodi has no doubt that I have metastatic melanoma. After I recover from my surgery and undergo radiation therapy, we will discuss additional treatment options. Will immunotherapy be among them? This is my fondest hope—but I also know it’s a long shot. At this point, in 2015, there are scant reports on the effectiveness of immunotherapy in treating brain tumors, and the latest drugs haven’t been applied yet to metastatic melanoma in the brain. For all I know, people like me are doomed.
I could easily despair. But years ago, I learned an important lesson from an unlikely source: Lance Armstrong. In 2007, my father was dying from colorectal cancer, and I flew back and forth from the United States to Poland to take care of him. I did a lot of reading on the very long flights, including, one night, Armstrong’s memoir about surviving cancer, It’s Not About the Bike: My Journey Back to Life.
At the time, my own battles with cancer were still in the future, but I wept as I read Armstrong’s book all the same. I identified with his competitive spirit and was deeply impressed with his approach to dealing with his disease, especially when it seemed there was no hope and he was destined to die young. When some doctors gave up on him and he didn’t have health insurance or the money to pay for treatment, Armstrong taught himself about his particular type of cancer, testicular cancer that metastasized to his lungs and brain. He then found the best institution and specialists in the United States for treating it.
You must be your own best advocate, Armstrong insisted. You can’t rely solely on your doctors or your family or anyone else; you have to stay on top of your own care, no matter how sick or exhausted you feel. Learn everything you can about your disease and your diagnosis, locate the very best doctors, find out exactly what drugs and treatments your doctors are giving you and what they’re supposed to do, never stop researching and asking questions, and check, check, check what the doctors tell you—get second and third opinions. All of this is up to you because ultimately no one else—not your family members, who love you, or your doctors, who want you to survive—is responsible for your health. You need a support team, of course, but in the end, you run this race on your own.
The comparison to a race is no idle metaphor. In high-level athletic competitions, as Armstrong wrote, suffering is part of the process. A high tolerance for pain, both mental and physical, gets you across the finish line. As a marathon runner and triathlete, I understood exactly what he meant when I read his book eight years earlier. Now, faced with the most daunting challenge of my life, I know that the athletic competitions I love so much are the very best preparation for enduring what lies ahead and, perhaps, surviving it.
I am getting ready for the competition of a lifetime. I have a high tolerance for physical punishment, and I have trained myself to never give up, no matter what. As I face this disease yet again, now in its deadliest form, that attitude—I will do this, I will make it—becomes my lifeline. Excellent health care and unwavering perseverance saved Armstrong’s life. I’m hoping it will save mine. The stakes are the highest they can be. Living—that’s the ultimate win.
And so, although the odds of my survival seem slim, my family and I set out to learn everything we can about metastatic melanoma. Luckily, we are well equipped for this project: Witek is a neuroscientist, Kasia is a physician, my sister, Maria, is a physicist working in radiation oncology, and Mirek is a brilliant, logical, cool-headed mathematician. Together, we study the mechanisms of metastatic melanoma and the best treatments available. We scour medical journals for the latest studies, and we
